Responding to requests of families for unproven interventions in neurodevelopmental disorders: Hyperbaric oxygen "treatment" and stem cell "therapy" in cerebral palsy

Developmental Disabilities Research Reviews

Volumn 17, Issue 1, 2011, Pages 19-26

  Bell, Emily ^a   Wallace, Tessa ^a   Chouinard, Isabelle ^a,b   Shevel, Michael ^c   Racine, Eric ^a,b,c  

^a CLIN RESEARCH INSTITUTE OF MONTREAL   (Canada)

^b UNIVERSITÉ DE MONTRÉAL   (Canada)

^c MCGILL UNIVERSITY   (Canada)

Author keywords

Best interests; Cerebral palsy; Hyperbaric oxygen therapy; Neurodevelopmental disorders; Neuroethics; Pediatric neurology; Stem cell; Unproven treatments

Indexed keywords

OXYGEN;

ARTICLE; CEREBRAL PALSY; CLINICAL DECISION MAKING; EMBRYONIC STEM CELL; FAMILY THERAPY; HUMAN; HYPERBARIC OXYGEN; MEDICAL ETHICS; MESENCHYMAL STEM CELL TRANSPLANTATION; MOTOR PERFORMANCE; ONLINE SYSTEM; PLURIPOTENT STEM CELL; PRIORITY JOURNAL; RANDOMIZED CONTROLLED TRIAL (TOPIC); STEM CELL TRANSPLANTATION; SYSTEMATIC REVIEW (TOPIC);

CEREBRAL PALSY; EVIDENCE-BASED MEDICINE; HUMANS; HYPERBARIC OXYGENATION; INTERNET; PARENTS; PATIENT PARTICIPATION; PROFESSIONAL-FAMILY RELATIONS; STEM CELL TRANSPLANTATION; THERAPIES, INVESTIGATIONAL;

EID: 84868253226     PISSN: 19405510     EISSN: 19405529     Source Type: Journal    
DOI: 10.1002/ddrr.134     Document Type: Article

References (64)

1. Amariglio N, Hirshberg A, Scheithauer BW, et al. 2009. Donor-derived brain tumor following neural stem cell transplantation in an ataxia telangiectasia patient. PLoS Med 6:e1000029.
2. Beauchamp T, Childress J. 2009. Principles of biomedical ethics. Oxford: Oxford University Press.
3. Bell EF. 2007. Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics 119:401-403.
4. Bernat JL. 2008. Ethical issues in neurology. Philadelphia: Lippincott Williams & Wilkin.
5. Bubela T. 2006. Science communication in transition: genomics hype, public engagement, education and commercialization pressures. Clin Genet 70:445-450.
6. Carroll JE, Borlongan CV. 2008. Adult stem cell therapy for acute brain injury in children. CNS Neurol Disord Drug Targets 7:361-369.
7. Carroll JE, Mays RW. 2011. Update on stem cell therapy for cerebral palsy. Expert Opin Biol Ther 11:463-471.
8. Caulfield T. 2004. Biotechnology and the popular press: hype and the selling of science. Trends Biotechnol 22:337-339.
9. Chavdarov I. 2002. The effects of hyperbaric oxygenation on psycho-motor functions by children with cerebral palsy. Proceedings of the 2nd International Symposium on Hyperbaric Oxygenation in Cerebral Palsy and the Brain-Injured Child. Boca Raton, FL.
10. Cohen MH. 2006. Legal and ethical issues relatingto use of complementary therapies in pediatric hematology/oncology. J Pediatr Hematol Oncol 28:190-193.
11. Collet JP, Vanasse M, Marois P, et al. 2001. Hyperbaric oxygen for children with cerebral palsy: a randomised multicentre trial. HBO-CP Research Group. Lancet 357:582-586.
12. Committee on Bioethics, American Academy of Pediatrics. 1995. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 95:314-317.
13. Committee on Children with Disabilities, American Academy of Pediatrics. 2001. Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability. Pediatrics 107:598-601.
14. Di Pietro NC, Whiteley L, Illes J. 2011. Treatment and services for neurodevelopmental disorders on advocacy websites: information or evaluation. Neuroethics, published online February 25, 2011.
15. Eisenberg DM. 1997. Advising patients who seek alternative medical therapies. Ann Intern Med 127:61-69.
16. Fox S. 2011. Pew Internet & American Life Project: Health Topics. Available at:http://pewinternet.org/Reports/2011/HealthTopics.aspx. Accessed March 1, 2011.
17. Frosch DL, Grande D, Tarn DM, et al. 2010. A decade of controversy: balancing policy withevidence in the regulation of prescription drug advertising. Am J Public Health 100:24-32.
18. Gross-Tsur V, Shalev RS, Badihi N, et al. 2002. Efficacy of methylphenidate in patients with cerebral palsy and attention-deficit hyperactivity disorder (ADHD). J Child Neurol 17:863-866.
19. Hadjipanayis A, Hadjichristodoulou C, Youroukos S. 1997. Epilepsy in patients with cerebral palsy. Dev Med Child Neurol 39:659-663.
20. Himmelmann K, Beckung E, Hagberg G, et al. 2006. Gross and fine motor function and accompanying impairments in cerebral palsy. Dev Med Child Neurol 48:417-423.
21. Hyman S, Levy S. 2005. Introduction: novel therapies in developmental disabilities-hope, reason, and evidence. Ment Retard Dev Disabil Res Rev 11:107-109.
22. Iguchi A, Kobayashi R, Yoshida M, et al. 1999. Neurological complications after stem cell transplantation in childhood. Bone Marrow Transplant 24:647-652.
23. International Society for Stem Cell Research. 2008. Patient handbook on stem cell therapies: appendix I for the guidelines of the clinical translation of stem cells. Available at: http://www.isscr.org/clinical_trans/pdfs/ISSCRPatientHandbook.pdf. Accessed September 15, 2011.
24. Kaimal AJ, Cheng YW, Bryant AS, et al. 2008. Google obstetrics: who is educating our patients? Am J Obstet Gynecol 198: 682.e1-5.
25. Khoo K, Bolt P, Babl FE et al. 2008. Health information seeking by parents in the Internet age. J Paediatr Child Health 44:419-423.
26. Lau D, Ogbogu U, Taylor B et al. 2008. Stem cell clinics online: the direct-to-consumer portrayal of stem cell medicine. Cell Stem Cell 3:591-594.
27. Liang BA, Mackey T. 2011. Direct-to-consumer advertising with interactive internet media: global regulation and public health issues. JAMA 305:824-825.
28. Liptak G. 2005. Complementary and alternative therapies for cerebral palsy. Ment Retard Dev Dis Res Rev 11:156-163.
29. Machado JJ. 1989. Reduction of spasticity, clinically observed in patients with neurological disease, submitted to hyperbaric oxygentherapy specially children with cerebral palsy. Annual Meeting of the Undersea and Hyperbaric Medicine.
30. Majnemer A. 1998. Benefits of early intervention for children with developmental disabilities. Semin Pediatr Neurol 5:62-69.
31. McCarney R, Warner J, Iliffe S, et al. 2007. The Hawthorne effect: a randomised, controlled trial. BMC Med Res Methodol 7:30.
32. McDonagh MS, Morgan D, Carson S, et al. 2007. Systematic review of hyperbaric oxygen therapy for cerebral palsy: the state of the evidence. Dev Med Child Neurol 49:942-947.
33. Mintzes B, Barer M, Kravitz R, et al. 2003. How does direct-to-consumer advertising (DTCA) affect prescribing? A survey in primary care environments with and without legal DTCA. CMAJ 169:405-412.
34. Montgomery D, Goldberg J, Amar M, et al. 1999. Effects of hyperbaric oxygen therapy on children with spastic diplegic cerebral palsy: a pilot project. Undersea Hyperb Med 26:235-242.
35. Murray E, Lo B, Pollack L et al. 2003. The impact of health information on the Internet on the physician-patient relationship: patient perceptions. Arch Intern Med 163:1727-1734.
36. Packard M. 2000. The Cornell Study. Presented at the University of Graz, November 18, 2000. Available at:http://www.netnet.net/mums/Cornell.htm. Accessed September 26, 2011.
37. Pappas S, Perlman A. 2002. Complementary and alternative medicine. The importance of doctor-patient communication. Med Clin North Am 86:1-10.
38. Peled A, Kollet O, Ponomaryov T, et al. 2000. The chemokine SDF-1 activates the integrins LFA-1, VLA-4, and VLA-5 on immature human CD34({Thorn}) cells: role in transendothelial/stromal migration and engraftment of NOD/SCID mice. Blood 95: 3289-3296.
39. Racine E. 2011. Neuroscience and the media: ethical challenges and opportunities. In:Sahakian B, Illes J, editors. Oxford handbook of neuroethics. Oxford: Oxford University Press. p 783-802.
40. Racine E, Van der Loos HA, Illes J. 2007. Internet marketing of neuroproducts: new practices and healthcare policy challenges. Camb Q Healthc Ethics 16:181-194.
41. Racine E, Waldman S, Rosenberg J, et al. 2010. Contemporary neuroscience in the media. Soc Sci Med 71:725-733.
42. Regenberg AC, Hutchinson LA, Schanker B, et al. 2009. Medicine on the fringe: stem cell-based interventions in advance of evidence. Stem Cells 27:2312-2319.
43. Riess P, Zhang C, Saatman KE, et al. 2002. Transplanted neural stem cells survive, differentiate, and improve neurological motor function after xperimental traumatic brain injury. Neurosurgery 51:1043-1052; discussion 1052-1044.
44. Rosenbaum P, Stewart D. 2004. The World Health Organization International Classification of Functioning, Disability, and Health: a model to guide clinical thinking, practice and research in the field of cerebral palsy. Semin Pediatr Neurol 11:5-10.
45. Rosenbaum P, Paneth N, Leviton A, et al. 2007. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl 109:8-14.
46. Rubin J, Wide K, Remberger M, et al. 2005. Acute neurological complications after hematopoietic stem cell transplantation in children. Pediatr Transplant 9:62-67.
47. Ryan KA, Sanders AN, Wang DD, et al. 2010. Tracking the rise of stem cell tourism. Regen Med 5:27-33.
48. Sanderson CR, Koczwara B, Currow DC. 2006. The ''therapeutic footprint'' of medical, complementary and alternative therapies and a doctor's duty of care. MJA 185:373-376.
49. Semere W, Karamanoukian HL, Levitt M, et al. 2003. A pediatric surgery study: parent usage of the Internet for medical information. J Pediatr Surg 38:560-564.
50. Shevell MI. 2009. Current understandings and challenges in the management of cerebral palsy. Minerva Pediatr 61:399-413.
51. Shevell MI, Dagenais L, Hall N. 2009. Comorbidities in cerebral palsy and their relationship to neurologic subtype and GMFCSlevel. Neurology 72:2090-2096.
52. Spence K. 2000. The best interest principle as a standard for decision making in the care of neonates. J Adv Nursing 31:1286-1292.
53. Tilton AH. 2004. Management of spasticity in children with cerebral palsy. Semin PediatrNeurol 11:58-65.
54. Tuffrey C, Finlay F. 2002. Use of the internet by parents of paediatric outpatients. Arch Dis Child 87:534-536.
55. U.S. Department of Health and Human Services Office of the Inspector General. 2000. Hyperbaric oxygen therapy: it's use and appropriateness. Available at:http://www.panamericahbo.com/OIGreport.pdf. Accessed on September 20, 2011.
56. U.S. Department of Health and Human Services Agency for Healthcare Research and Quality. 2003. Hyperbaric oxygen therapy for brain injury, cerebral palsy, and stroke. Available at:http://www.ahrq.gov/clinic/epcsums/hypoxsum.htm. Accessed on September 20, 2011.
57. Waalkes P. 2002. Adjunctive HBO treatment of children with cerebral anoxic injury. Army Med Dept J PB 8-02:13-21.
58. Wade L, Shevell M, Racine E. in press. Ethics in fetal neonatal neurology. In:Mill S, Shevell M, editor. Acquired brain injury in the fetus and newborn: Wiley-Blackwell [Mackeith Press].
59. Wainstein BK, Sterling-Levis K, Baker SA, et al. 2006. Use of the Internet by parents of paediatric patients. J Paediatr Child Health 42:528-532.
60. White M, Dorman SM. 2001. Receiving social support online: implications for health education. Health Educ Res 16:692-707.
61. Woodard P, Helton K, McDaniel H, et al. 2004. Encephalopathy in pediatric patients after allogeneic hematopoietic stem cell transplantation is associated with a poor prognosis. Bone Marrow Transplant 33:1151-1157.
62. Zarzeczny A, Caulfield T. 2010. Stem cell tourism and doctors' duties to minors-a view from Canada. Am J Bioeth 10:3-15.
63. Zhao LR, Duan WM, Reyes M et al. 2002. Human bone marrow stem cells exhibit neural phenotypes and ameliorate neurological deficits after grafting into the ischemic brain of rats. Exp Neurol 174:11-20.
64. Zuckerman D. 2003. Hype in health reporting: "checkbook science" buys distortion of medical news. Int J Health Serv 33:¥ 383-389.